How are people with liver mets doing?

LFF I remember feeling exactly like that when my HGB went down to 5.2. Yep hospital and two units of blood. That was a almost two years ago but I won’t forget to listen to my body.

BLMike. I’m so sad to hear this news about your wife. Prayers for both of you.

Kattysmith. It’s good to hear from a fellow Texan. But, of course, I don’t like to hear that you got the talk. We all know we’ll get the talk at some point but I dread it. I’m too close for comfort. Nothing is working for me. Chemos are fail, fail, fail. I’m taking a three month break from any TX so that I can make some good memories with my family. My grandson is 9. I may consider a clinical trial in the fall but I don’t think I will do anymore chemo.

Wish we didn’t have such tough decisions to make

cross posting with local liver procedures...

Has anyone had local liver treatments to liver mets at Memorial Sloan Kettering? If so, what kind of treatment(s) have you had?

After my hyper explosion of mets from my short period on immunotherapy, my interventional radiologist at Hopkins said he wouldn't do anything else local with my liver. I am currently on xeloda and neratinib. Bone mets are stable but the issue is the liver mets.

I have watched for about two years the expansion of material on the MSK site about liver treatments, especially mets, and it seems that they are talking about a lot of options in a lot of situations. On a short video that I watched, they were talking about how many procedures they do in a year, and how it may be best to go to a high volume center for these types of treatments.

Thanks for any info you can provide. I've had 3 microwave ablations.

BLMike so sorry to hear this!!!!!!!! UGHHHHHH I am so angry for you both!!!!!! There are no other words.... except prayed for you both.

Saulius you both look so great and so healthy. I pray we all soon get drugs like HER2+ has so we all have the same chances that you both are getting its so great for you both!!! I am so happy you both look...so happy!!!

Kabuki,

With the right treatment it is possible to greatly knock it back down. It's just as important how you respond to treatment, as the starting point. Treatment type will depend on the characteristics of the cancer. Have they done a biopsy and given you back results on hormone receptor status and HER2 status?

BLMike, I too am very sorry to hear of Polly's recent downturn. It's hard to read that one of our own is at the point of hospice. Sending you both warm thoughts and a wish that you can feel the support coming from this group.

Thinking of Grannax2, Kattysmith, Nicole, and Kabuki. Each of you have different things to get through, and I hope each of you comes out in a good place.

Saulius, It's so nice that you posted that pic for us to have a real image of you as we read your posts. You both look fabulous!

BLmike and Polly- you are exactly right- too soon. We appreciate your candid sharing of your situation. Hoping for the best and enjoy each day forward. 🌞

Salina- thanks for sharing your beautiful photo. NED is awesome. I know those 3 LN are frustrating to be sticking around but 7 months stable is great. Enjoy🎉

Kattysmith- This is a treatment I was pursuing for neuroendocrine BC. Contact Susan Cork if you are interested. https://clinicaltrials.gov/ct2/show/NCT04276597

Buttons- is it cellulitis in the LE arm? I hope you get answers. I know how awful LE is to live with.

DEE

BLMike, I am so sorry, my thoughts and prayers are with you and your wife.

Kabuki, When I was diagnosed with liver mets last year the pet scan results said: “liver engulfed in metastatic tumors”. I had ascites and was in a lot of pain. Taxol worked wonders for me.

Kabuki

1st Dx, widespread liver mets, adriamycin, cytoxan for 3 months then switched to Letrozole, Ibrance, 3+years

1st Progression, widespread liver mets, Xeloda, 15 months

2nd Progression, widespread ( diffuse with tumors from 3 cm to 10 cm), Weekly Taxol, just started, we will see!

So many options Kabuki. Your MO will find the right combo.

Kabuki - liver mets only , but 11.8 cm (on MRI, larger on PET-CT), 4. 8 cm + numerous other tumors. NED within 8 months on Verzenio + Anastrazole. Hang in there.

Mermaid007- I was on letrozole alone for 14 years- I was immediately switched from Tamoxifen to letrozole after finding a liver met (3 years after initial BC diagnosis). After 6 months it disappeared just as I was planning on an ablation, and stayed gone for 14 years. This was the first drug I took once I was metastatic ( I had IV drugs for my initial diagnosis for Stage 3-AC and Taxatere). I think I was highly ER+ and the AI kept my estrogen level low so as not to feed my liver tumor. I don't know anyone where the drug worked this well.

Kabuki I think you are right about those that are ER+ but PR- HER2- are more resistant to treatments. That is what I am and I have not gotten a treatment to work more than 4 months..I just finished 5th line.

NicholeRod, How frustrating for you. I’m still waiting for the FISH test for Herception. The oncologist said even if it comes back negative he may recommend Herception. He said in some cases they are seeing some success with the drug.

I’ll let you know what he says the next time I see him. I was PR+ with the original breast cancer do the histology is changing to adapt. Not a good thing

Kabuki...wait...I am confused what was your original... ER+ PR+ HER2-??? My originial BC Stage 0 was ER+ PR+ HER2-...recurrence Stage 4 was ER+ PR- HER2-....and my HER2- (at that time 2 years ago) was 0% for HER2+..... I don't expect that has changed except to go to Triple Negative....

Will be cross posting on Bone mets thread.

I just got a call from Nicole a few minutes ago. I hope I can relay this well, in tears trying to write this and was in shock to hear where she was when she called. Nicole is in the hospital. She fractured C7 this morning when she woke up. I didn't get to speak to her long because she is on alot of pain medication right now, she said that there isn't anything they can do about the fracture. (Could they do anything?). She asked me to let you all know where she is and I know she would definitely appreciate prayers for her as she said and sounded like she's in a lot of pain.

I hate this disease, i really really do.

oh no. Poor Nicole. She just can’t catch a break. Surely there is something they can do to stabilize the spine??? Nicole, thinking about you.